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HELP!! advice needed on autism and cormobidity - dolfrog

13 replies

LivinInHope · 02/11/2011 18:27

Hi, Please can someone help me understand this situation. Ds 9 dx with autism earlier this year. He is in year 4 and has constantly refused to write since year 2, he displays a lot of dyslexic tendencies and i have requested an assessment. I have completed the checklist and have answered yes to the majority of questions. After enquiring whether the screening test had been done i was informed by school that alot of conditions such as ADHD, dyslexia exist in autistic children.

Dolfrog you seem to be very knowledgeable on these issues and any advice would be appreciated, literacy for my child and some parts of numeracy are becoming a real issue and causing behavioural problems. Does a diagnosis of autism mean that a child definately will have learning difficulties? although i don't think we should label children it does help to understand a childs difficulties to get the right support in place.

OP posts:
dolfrog · 02/11/2011 19:28

LivinInHope

There are two levels of diagnosis; the observable and the scientifically clinically diagnosable

The observable inability to perform a task such as dyslexia and a behavior trait form of diagnosis such as Autism ASD.
Both Dyslexia and Autism ASD have underlying cognitive causes, or clinical medical causes which are probably of a genetic origin.

Dyslexia is about having cognitive problems decoding and recoding a man made communication system the visual notation of speech, or the graphic symbols society chooses to represent the sounds of speech. There are two types of dyslexia; Developmental Dyslexia which has a genetic origin, and Alexia (acquired dyslexia) which is the result of a severe brain injury, substance abuse, stroke, dementia or progressive illness

Research has identified three cognitive subtypes of developmental dyslexia: auditory, visual, and attentional. Which means that an auditory processing disorder (listening disability), a visual processing disorder, an attention disorder, or any combination of the three can cause the dyslexic symptom. These three types of disability can be clinically diagnosed. And are still subject to ongoing research as to the neurological causes, and identifying the candidate genes related to each of the issues.

Autism due to the complexity of multiple cognitive issues involved is still in the early days of research being able to identify all of the co-morbid issues that can combine to cause the Behavior Traits which are currently used to provide a subjectively observed diagnosis. Research has found links with ADHD and issues at the auditory cortex for many who have a diagnosis ASD. Which would imply that various forms of auditory processing disorders (listening disability, or not being able to process the meaning of what you hear) is a contributing factor to the communication problems experienced by those who have an ASD diagnosis. And there are the visual processing problems which can be associated with Gaze etc.

It would appear that research is indicating that dyslexia and autism which are both spectrums of communication disabilities share one or more underlying cognitive causes, such as Auditory Processing Disorder and ADHD, and may be more as yet to be scientifically identified.

You could have a look at the following research paper collections.
CiteULike Group: Developmental Dyslexia - library 496 articles
CiteULike Group: Autism - library 332 articles
CiteULike Group: Attention Deficit Hyperactivity Disorder (ADHD) - library 137 articles
CiteULike Group: Audiology and Auditory Processing Disorder - library 437 articles

or you could have a look at my PubMed research paper collections which are listed on three web pages and / or my Diigo Key References Links List

It is all quite complex, and will probably take years for the UK education system to adjust to the scientific realities. I hope this helps, I am still on a voyage of discovery to help my DC.

amberlight · 02/11/2011 19:38

If a child is on the autism spectrum, they could have any IQ at all from very low to very high. All of us have learning difficulties of some sort though if you include social learning. We're complete rubbish at it (generalising).
Interesting that he won't write. Will he type? Just trying to think about what might be stopping him from doing so/wanting to do so...

moosemama · 02/11/2011 20:48

My ds1 is also 9, although in year 5 and has AS.

He has refused to write pretty much anything for a few years now and whilst we knew he struggled with his pencil grip and struggled to learn to write in the first instance, we couldn't get to the bottom of it. By year 3, he was essentially producing no classwork at all and that continued for much of year 4.

We eventually found out what the underlying problem was when he had his Occupational Therapy Assessment in February this year. It turned out that he has hypotonia, which is particularly bad in his core and upper body. This means that he finds writing stressful, painful and exhausting, as sitting at a desk (ie holding himself in an upright position) gripping the pencil and moving his arm and shoulder to write are all really hard for him.

Once we had the report, we asked him a few questions and it turned out his arm, neck, back and shoulder hurt when he's writing. Since then we have found a way of using cushions at home to help position him a bit better, as well as working on him keeping a loose/relaxed shoulder and arm and gentler pencil grip. We do 5-10 minutes a night of practising this, using his spellings as the text, iyswim and we have seen some improvement this school year in both his attitude to writing and also the quality of his actual handwriting.

In addition to that, we found out from a WISC IV assessment that he has a low processing speed and after a bit of research, found out that children with either a normal or higher IQ who have slow processing speeds find it very hard to transfer their ideas and answers etc to paper. Effectively he felt stupid for not being able to work fast enough, so he stopped working. The school is now taking this into account and depending on the subject, either extrapolating his marks from the amount his does manage to produce, or giving him extra time to complete his work.

In the spring he was given an AlphaSmart and we used the BBC Dance Mat Typing off their website to teach him to type. He uses the Alpha Smart for longer pieces of writing and that definitely helped take the pressure off him and enabled him to show his teachers what he was capable of if we removed handwriting as a barrier.

Today his teacher came to see me after school to tell me that he had written masses of information on a diagram he'd done this afternoon and she was really pleased with him, which is amazing, considering this time last year he wouldn't write in school at all.

It may not be the same for your ds, might there be some physical pain or discomfort adding to the reluctance to write?

LivinInHope · 03/11/2011 00:14

Thanks for all your replies

Dolfrog thanks for the links will definately look up. Ds is complex, I have a mountain of reports spanning 6yrs from various professionals and yet we are still at a stage where no professional can provide me with a an A4 sheet outlining my childs profile. This would consist of strength's, impairements and needs with a list of appropriate, measurable targets and provision required. He is the same child following ASD diagnosis, but unfortunately its the label that professionals within health and education respond to most.

amberlight there are other issues such as manual dexterity, fine motor co-ordination difficulties which tire him out. OT has recommended a laptop for him to use and he hasn't responded well to this. Its just the severity of his behaviour when he is pressured to write and low self esteem which concern me mainly. He is a passive child who constantly refers to himself as 'stupid' and 'idiot'.

moosemama Its very reassuring to hear that your ds is responding well to the strategies you mention. I will definately discuss them with school and work on at home, until now even the professionals are at a loss on how to change this patten of behaviour and resistance to write.

Ds also has OT assessment earlier this year which identified poor muscle tone in the shoulder and pelvis. I am concerned about the health of his back as it has a significant curve and he struggles with standing upright whilst climbing stairs.

My main reasons in asking for the dyslexia screening is poor auditory memory, visual sequential memory (5th percentile) he has scored in the 98th percentile on ravens IQ test. Letters/numbers are occasionally reversed, missess/adds/replaces words whilst reading e.g 'looked' is pronounced 'liked'. He confuses 12 for 20 and 15 for 50. poor spacing betweeen words, loses track of where he is when reading. Can pronounce ' version' 'installed' but can't spell 'they' or 'cold'.

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amberlight · 03/11/2011 07:38

I'm wondering how he's get on with an iPad and an app or two that helps with writing. The dyslexia charities might be able to point you at something useful if the school budget will allow for it/if there's some way for the family to fund one. There are some very nifty apps out there now.

I'd definitely be asking for dyslexia and dyspraxia specialist input. (My ds is dyslexic, dyspraxic, short term memory problems and ASC). He needs to know that he's not stupid, so the school really do need to take this seriously.

moosemama · 03/11/2011 15:58

Livin, my ds is one of the top readers in his year and the youngest child ever to become a free reader in his school, but, he has developed coping strategies to handle his visual issues, so he will sit with his book on the floor or sofa and squat above it, leaning with one elbow on one knee and his hand covering his eye. When he has to read aloud, he hates it, because he is made to have the book on his desk or hold it at arms length and then he skips words or lines.

Iirc, it was visual sequencing that brought his scores down for processing on the WISC IV. He was on the 16th centile for processing, but 95th for verbal reasoning. According to the EP who did the assessment and the orthoptist and consultant optician I have spoken to, this is because he struggles to track across the page in a straight line and the test called for him to constantly look from the left to right on the page and then manipulate or sequence the image he saw.

When writing, he doesn't put spaces between individual words, but will put big spaces between letters within a word. A page of his writing looks like a whole page of random letters with some placed together and lots invidually/separately placed. This doesn't happen when he touch types though, as he is typing as he thinks, rather than looking at what he's producing, iyswim. When writing, all his letters are random sizes, some capital, some lower case and placed randomly above, on or below the line.

The Alphasmart is simpler than a laptop and only shows about a paragraph/few lines of text at a time, so is better for children with visual/dyslexia type problems as it narrows the field of vision. Could a word processing programme on a laptop perhaps be too bright or too much visual information all at once for your ds to handle - much like a full page of words in a book?

He can spell long complicated words, but generally gets simple ones wrong time and again in his work and can pass his spelling tests, but can't apply those spellings to his written work.

The muscle tone problems in your ds's shoulder and pelvis will almost certainly be having an impact on his ability to sit comfortably and concentrate. My ds is now also developing a curved spine and suffers from back-ache both between his shoulders and lower down in the middle of his back, but we have been told he doesn't qualify for physio/OT in our PCT, because he tested on the cut off for dyspraxia. One point below and he'd have been offered help.

Its awful when they are so resistant to writing, yet you know they are bright, but unable to show it in academic terms, especially when they believe they aren't clever enough as a result.

It's taken us two years of softly softly with ds and on reflection the best motivator was taking the pressure off him to write for a while.

Would the school possibly consider him using voice recognition software? I know some school are a bit anti, but if its a way he could show them what he can do without the barrier and pressure of having to write, it might be worth the fight.

LivinInHope · 03/11/2011 19:43

moosemama

OMG! your Ds sounds very similar to mine. it's so frustrating watching them struggle. Did ask for voice activated software two years ago, but it all came down to resourceswas fobbed off with a useless report from ed psych describing Ds reluctance to write as 'unusual'.

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moosemama · 03/11/2011 20:14

Livin, I found this article written by a lady who has AS herself, as well as a child with AS really interesting with regard to what else might be going on to make ds1 refuse to write, other than just the physical aspects.

She's definitely on to something and I see a lot of ds in what she writes.

You are absolutely right, its frustrating and heartbreaking watching them struggle and then you get so blooming angry at the ineptitude of some of the professionals you come across who just don't seem to get it - and they're supposed to be the experts! Angry

anonandlikeit · 03/11/2011 20:41

Moosemama
Has your ds had a full ot assement (motor & sensory) ds2 also yr4 with ASD cannot write, struggles with reading, spelling is a complete mystery to him.
Had a full dyslexia assessment & they were unable to formally dx as he has trouble giving accurate responses.

However his OT assessment picked up huge planning problems & bilateral integration problems, basically both side of his brai working in isolation. This makes reading & particularly writting very difficult & a huge chore.
He is receiving argeted OT therapy now and we ahve seen improvements in his coordination & his reading.

He also uses Clicker 5 at school, so at least he is able to demonstrate his understanding of the lesson as he is able to hover over the phrases & it reads it back to him, he is then able to select the words he wants to use.
Its all a slow process but it does mean he is able to show his understanding without the added pressur eof him dictating to his LSA which with autism is a very difficult thing to do.

moosemama · 03/11/2011 21:11

Anon, we were promised a sensory assessment, but when it came down to it we were told they didn't have anyone on staff who could carry out a a sensory assessment. In fact the OT who did his motor assessment was leaving the day she wrote his report and they were already short-staffed.

That said, there was something in the report about bilateral coordination or skills relating to crossing the midline, but I'd have to go and dig it out to check what exactly she said.

Was the targetted OT therapy done on the NHS or privately, if you don't mind me asking?

We are building a list of things we are need to pay privately for in order to support ds1, Behavioural Optometry being high on the list as well as OT. Is there something/one in particular we should be looking for when we manage to scrape enough money together to pay for him to have some private OT?

The Clicker 5 sounds like an interesting possibility for LivinInHope's ds.

anonandlikeit · 03/11/2011 21:58

His OT & snesory therapy is NHS, we are very lucky to have a NHS autism team specifically for school age childrens with PHysio, specialist OT, SALTS, Psychs & paeds all working in the same group.
His paed told me our specialist advanced OT carrying out is SIT is oine of only 5 sensory OT's on the NHS in the country.

For optometry have a google at Professor Arnold Wilkins he is based at colchester uni and is an expert in asd/visual stress/irlens etc. He has seen ds2 free of charge. Not sure where you are but if it sounds like its suitable for you just drop him an email, he's a lovely man.

DS2 had an IT assessment at the local sn school and was given clicker 5, the school paid something toward having it available throughout the school as its actualy very good for all children as it can be used to stretch the more able childrne also. We are looking at having it installed at home as it is helping his communication & confidence

moosemama · 03/11/2011 22:06

Thank you anon. That does sound like an incredible ASD team you have there.

Thank you for the recommendation. Colchester is a fair old hike from where we are. It was suggested we take him to Aston University Vision Sciences, you still have to pay, but its significantly cheaper than seeing a BABO. Unfortunately you have to agree to having a team of students involved in the consultation and I don't think ds would cope with that. We have a paediatric eye clinic at our local hospital and both the Consultant Optometrist and Lead Orthoptist have said it would be worth getting him referred there for a full assessment in the first instance, as they might be able to help with some things and can possibly recommend where best to take him if they find anything they can't deal with or suspect that there's something else going on with his vision. I guess its as good a place as any to start.

I need to get him to the GP to arrange the referral, but there's never enough days in the week!

LivinInHope · 03/11/2011 23:33

Hi Anon, Moose. This is getting very interesting, i'm also pursuing a referral for behavioural optometrist through GP. Apparently 'vision therapy' helps with visual tracking and perceptual difficulties. Also considering Private OT/SALT assessments and have just paid for an ed psych to come in to help with the writing issues. Living up north and struggle at times as most specialised practitioners are based in the south of the UK

thanks moose, looked at the article it's very insightful. will also google clicker 5, currently in the tribunal process for refusal to carry out SA and therefore overwhelmed by the complexity of Ds difficulties. Ds2 5yrs is also presenting with communication difficulties. Professsionals are being very accomadating and booking both children in for appointments together :(

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